Posts tagged gluten
The Jury's Out on Gluten
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Yesterday, I found myself in the gastro doc's office for two and a half hours. We went through in detail my history of eating disorders, veganism, vegetarianism, surgeries, childhood afflictions and allergies, family history. The nurse practioner who spent so much time with me reviewed the results from my last colonoscopy. She told me all the things that could be causing my distress. She told me that the last gastro doc eyeballed my gut but didn't actually do a biopsy for celiac disease. She told me sometimes part of my stomach gets stuck in my esophogus. (!) She said they needed to start over. I began trying to hide my anxiety attack.

She ordered labs to look at my kidneys, thyroid, liver. She ordered an upper scope and colonoscopy for next week. She asked for all sorts of things too gross to list. She gave me a sheet on colitis. She told me a list of other drugs that might help, one of which was steroids. 

I started to cry.

I told her one of the ways I manage my eating disorder history is to try very hard to stay in a ten-pound window that is healthy and realistic. I told her I knew it's possible my mother is right and my ED contributed to my current suffering, but that talking about it like that makes me feel like I somehow did this to myself on purpose, which brings back memories of people thinking I did anorexia to myself on purpose, that I am to blame for everything bad that happens to my health. I told her I'm scared of steroids.

She dropped her papers and rolled herself over and touched my arm. She told me she understood and that would be a last resort.

I understand how stupid it sounds to be so afraid of weight gain. Welcome to the wonderful world of ED recovery. I write this here not because I want to scare my family into thinking I'll relapse, but because I work so very hard not to relapse, and I'm always actively managing what I put in my body with that in mind. It's important my doctors understand that if they have choices about which medication to give me, they should not give me the one with a side effect of weight gain. I've been shocked at how willy nilly doctors can be about not telling their patients this pill or that pill could make you gain forty pounds, by the way. It's true that everyone's body responds to things differently -- something I am learning more and more as I get older -- but still. If I were a doctor, I would tell people things like that.

And she said since I'm getting a colonoscopy next week, it won't make too much a difference to eat gluten. She suspects it's not gluten because the situation is so severe, but only a biopsy can tell for sure.

I went a week without eating any gluten at all. It was actually not as hard as I thought it would be. Eating at home was a snap. Eating out was a giant pain in the ass, but we only ate out one meal in that week I was off gluten. More and more, that's the case for us, especially in the summer. It's so expensive. I didn't realize how expensive eating out was until my husband lost his job last fall and we drastically cut our food budget. However, sometimes it's really fun and necessary and being gluten-free while eating out sucks eggs. 

She also bumped up my Welchol to three giant horse pills in the morning and evening to see if that would have any effect. She said at this point, it's just a process of elimination until we figure out what is causing my problems. As I stared at the chart listing all the things that can be wrong with my digestive system, I was pretty overwhelmed. And I felt pretty old. 

She asked me, though, to please let her keep trying to find the problem, since I admitted I'd only gone to two gastro docs once each because what they gave me didn't help. I asked her if she thought that was weird because clearly I had a problem, and she said, "You'd be surprised what people will tolerate until it becomes their normal."

Isn't that an interesting sentence? I am so stealing it.

So now that I have absolute, positive verification that no, what's happening with me is clinically significant, otherwise known as ZOMG YOU ARE A FREAK OF NATURE, I'm promising myself I'm going to figure out, at least, what is causing these issues and see what I can do to bring it down to a low roar. Even though the doctor's office called me in a panic this morning because my insurance is changing again and I don't know the new number and won't until July 1. And my colonoscopy is on July 3. 

Last night I ate a huge plate of broccoli and mac & cheese. Hello, gluten, my long-lost love.

 

The Dreaded Gluten-Free Experiment
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I am so sick of my gut.

I have already been diagnosed with bile acid malabsorption and take medicine for it, two huge pills twice a day. However, those pills can't be taken within four hours of any other medicine or it won't be absorbed properly, either. Since I value my mental health more than my bowel health, I put the priority on taking my antidepressants at the same time every day, but whether I remember to take the other pills twice a day within four hours is another question. Some days, I am great. Other days, particularly at certain times in my cycle, I'm a train wreck. 

I asked my doctor whether I should eliminate gluten, both the regular doctor and the gastroentologist. I don't remember exactly what either one said, but I know neither of them instructed me to give up gluten, or I would've tried it. Without being directed by a doctor to do it, I've been totally dragging my feet, because the thought of someone saying, "Is there something here you can eat?" and worrying about making special meals so I can eat or worrying every time I go to a restaurant about what I will eat -- well, that feels a lot like the years I spent as a vegan and vegetarian to disguise my disordered eating. 

I really, really don't want have "bad" foods again.

But I'm so, so sick of feeling sick. 

I've asked people about it before, maybe even written about it here, I don't remember. I've heard you have to go for a month before you can even tell and you have to replace your toaster and there might be gluten in your medicine and your lotion and HOLY FUCKING SHIT YOU ARE JUST SCREWED SO EMBRACE GOOD TOILET PAPER.

I could cry. Seriously. This is how much I hate thinking about regulating my diet like this. It's not that I'm so in love with bread. It's that I really despise thinking about food that much. It's a very short path for me from reading labels to counting calories and all the rest of it. 

Of course, I decided to try this experiment of eliminating gluten for at least two weeks right after eating a whole wheat tortilla for breakfast. I am going to try it anyway, as best as I can, then go back to see my doctor and discuss the situation with her again. She's moved to a new practice and my insurance is changing in July and hopefully that will all synch up so as not to cause weird insurance nightmares.

I HATE THIS. But I guess I have to try. I've been tested for celiac disease and Crohn's and lactose intolerance, and I don't have any of those. At one point in my life, I was told I had IBS, but ha ha! That was actually endometriosis. I know I'm getting older and having your body go all whack is just part of that, but I am having a big, fat pity party today, anyway. 

WHINE WHINE WHINE WHINE WHINE

(sob)